Thursday, January 29, 2009

Hello, to anyone who finds my blog via this post, having come from Kate's Yin and Yang website. Today is the first day the reincarnation of this blog came into the public sphere, after the original was lost from schizophrenia.com (that whole site now erased and/or abandoned). The process of reconstructing it here as we speak will take a long time as the whole blog covered 5 years. Even if some 500 pages cannot, alas, be retrieved, 1000 pages will be converted to posts here if I successfully accomplish my goal. I hope as well to add to it in the process, though in the end, I'd like to merge it, or at a minimum, link it to my wagblog.wordpress.com blog, since the two, though somewhat dissimilar, are nonetheless both authored by me and ought at least to be related in some fashion so readers of one can if interested get to the other.

"My head is filling with people screaming and gnashing their teeth...I fear I may need to barricade the door." That's how I ended my last wordpress blog entry, the one I wrote tonight, after the visiting nurse, finally reassured I'd be safe, left. Oh, I am safe, safe from myself at any rate, which is what I knew mattered to her, visiting behavioral health nurses always being concerned most about suicide and/or acts of self-injury towards that end. And since I have followed such commands to set my leg on fire or put rolls of cigarettes out on my face, I suppose I can appreciate her concern. But tonight, it is not myself whom I fear, but the social chaos of a society gone mad with fear. They are all running away from the rising water, the rising sea level, the reversed gulf stream that is freezing the coast line forcing everyone inland. That is what they tell me, all the people, crying and moaning...But then they stop and there is quiet and I am confused. Where did they go? How could so many miserable, terrified people outside my door suddenly fall quiet en masse? Do I dare look outside? Do I dare go outside my door?

I just put the barricade up and my heart rate fell shortly thereafter, as the noise level went down as well. Now I feel safe. Now I feel safe.

I will return to the reconstruction of the Wagblog of schizophrenia.com website except that I want to add one thing. Please note the following, which I found on the website "Is Barack Obama the Messiah" website: 'Lawrence Carter, dean of the Martin Luther King Jr. International Chapel] said many people look for a sign from God when times are turbulent. And, he said, there are many elements to Obama's win in which Christians can find spiritual significance.

"It is powerful and significant on a spiritual level that there is the emergence of Barack Obama 40 years after the passing of Dr. King," said Carter. "No one saw him coming, and Christians believe God comes at us from strange angles and places we don't expect, like Jesus being born in a manger."

Some see God's will in Obama win, by Dahleen Glanton. Chicago Tribune November 29, 2008.'

There were other such evaluations but I would like to make an observation: one is that Barack comes from B-R-K, in arabic meaning "blessed or blessing", two, that Hussein, his middle name, is an alternate spelling of Husayn, which is a diminutive of Hasan, the grandson of the prophet Muhammed, the founder of Islam. (Note: Obama's father was born a Muslim but soon became atheist, while Obama himself belongs to the United Church of Christ.) Nevertheless I would note that Hasan/Hussein refers back to a god-like or prophetic personage, which is significant, though not the specific religion. Three, and this strikes me as most important of all, while "Obama" itself may have no meaning, what no one has noted before, spelled backwards, amabo, it means in Latin "I will love...". And who will love, unconditionally everyone? Jesus, come again, in glory and splendor to usher in the Kingdom of God, but also the End of this World.

I will say no more, only present the evidence such as it is and let you look upon it. It is not complete, not here, not yet. But as the weeks pass I will be adding to it if it presents itself further to my eyes. As I believe it will. For I suspect that this good man at the head of our government is not to lead us merely out of a temporary "economic downturn" but has, as it has been suggested from many many corners, "come to lead us" in the path of righteousness...and towards an unimaginable future. Alas, it is a future I myself do not wish to see, being too lovingly attached to this green world, as little green as it still is. And I do not want to have it end, not even for the second coming of Christ. So I grieve it's loss the more, and weep and weep...

Friday, January 16, 2009

This was originally written on 7/14/2004, just before I was hospitalized I believe.

MANIFESTO or Grey Crinkled Paper #2

First, personal business: the voices are back, music especially, but also the old password voice running along, like a TV show's "audio crawler." This is very distracting, even the music, yet at times, as commentary, it seems much more truthful than what is said by those whose voices are "real" or at least non-hallucinatory. I know I saw some show with my friend Joe that illustrated what these voices are like, within other contexts and in other times, but we’ve both forgotten which show it was (perhaps Star Trek Voyager?). As I wrote in my entry on "Voices," the movie, LULU ON THE BRIDGE, gives a brief but helpful example of the more muted, confused babbling form they sometimes take, as when, for example, Harvey Keitel is walking along that wall at night...

In any event, the password voice is my one-word short-hand for the way the voices sometimes sound to me: 1) monotone 2) stage-whispered 3) secretive yet as if imparting a truth others should not hear.

That said, let me explain what they talk about:

Grey Crinkled Paper, first of all, which must be spelled grEy not grAy, though the reason for this particular spelling is unknown to me. How it came to be part of my life was, as I belive I wrote in the first Grey Crinkled Paper entry, at age 16 or 17 when my body inflated like a Macy's Thanksgiving Day parade balloon and my hands turned blue, which was the most important thing about the experience before the vision, revelation -- what have you, something that cannot be truly verbalized -- came to me in the words: Grey Crinkled Paper. It was what I understood to be a kind of holy trinity, very much like Father, Son, Holy Ghost, or Newtonís 3 laws of thermodynamics, or Einsteinís three: 1) the special theory of relativity, 2) the general theory and 3) the (never discovered) unified field theory.

Now, there are complications to this, because once I can get the problem of GCP solved at least in this world, I will be freed from the Supermetal Canister into which I was placed as punishment for some higher dimensional crime. Meanwhile, onto the walls of this canister are projected in All-Sensurround the reality of this 3-D earth-world, while electrodes, implanted in my skull, impart knowledge of cosmic history as well as of a personal life, consisting of "memories" as well as their significance.

(The other way to free myself, apart from solving the problem of Grey Crinkled Paper, would be to surgically remove these electrodes, which would be painful, but which would prove my worthiness to be welcomed back to those higher dimensions...)

To continue from previous paragraph:

which means that people here are actually no more than the equivalent of movie projections, only apparently real. When I am liberated, all of them will, along with the world and the rest of the canister’s projections, end, pfft!--with no more suffering than Humphrey Bogart "feels" when Casablanca finishes for the umpteenth time.

The Canister is made of Supermetal which has always been explained to me as Titanium/Uranium. Whether this is a feasible earthly metal alloy or simply the English equivalent for something there we have no concept for I don’t know.

Involved with this are the Five People. They 1) are not in themselves stable as persons, that is in their appearances; they will take on a body when convenient and leave it when it is no longer useful, without the real person ever being aware of it, 2) these bodies are disguises, ever-fluid and changeable at will. For example, there was one security guard when I lived in supervised housing at the old nurses' dorm at the hospital that I knew was one of the Five People, and he knew I knew, which led him to torment me openly: bugging my room, video-monitoring me, giving me non-verbal messages whenever I passed him. I recognized him, and his face stayed the same that entire year, but as soon as I moved out, he left that body and now I no longer know where he is or in which body he is hiding.

I have had for some time now a vague suspicion that the part-time social worker in this building may be one of the Five People, if not the very same one but the same one or anther it scarcely matters... 3) what I know of these Five People is little except that they used to be controlled by my father and were utilized to monitor me, and therefore theoretically they could be used to eliminate me at any time. However, my being the messenger of Grey Crinkled Paper might attentuate this power, making it impossible for someone-- whoever is behind them, whoever is controlling and sending them --to actually kill me.

Who or what these Five People are, why they are, where they come from, these non-human beings (emphatically not aliens) is not very clear to me right now beyond this. One thing I understand is that like most things in this context, they too must have some connection to the higher dimensions and Grey Crinkled Paper.

Grey Crinkled Paper BTW is a concept and is neither grey-colored nor paper-y nor crinkled. No single word of it can be taken separately to signify anything without the other two.

However, Grey Crinkled Paper doesn’t mean anything either, not even to me. It is only a message of supreme importance. It just is the vehicle, the memo given to the messenger who happens to be me, and until it is understood by all, can be understood by none and cannot be utilized as it should be to achieve world peace. The problem is that in order for anyone to get the true meaning, it must be translated 22 times by 22 native speakers of 22 different languages or dialects, two of which *must* be Arabic and Farsi (I don’t actually know if this last is a written or spoken language, moreover, I didn’t know what the word meant at all when I was first given the information and assignment at age 16).

This part is critical: The translation of Grey Crinkled Paper must be sequential in time and space and must be done without reference to or help from the original transfer-er of the message (ie me). You can think of the translation process like this: it's as if someone were to say the quay of Normandy and another person heard it as key of Norman Dee and then translated this into his or her native language. Such a misunderstanding is inevitable and it is not a error but is the entire point. Like the telephone game that kids play in which a phrase, whispered from child to child, comes out transformed at the end, so too will GCP be transformed. While the child's game’s message may be nonsense, in the 22-link chain of the Grey Crinkled Paper translation, the end result will make a sense that everyone will instantly understand and appreciate. In short it will reveal the true meaning of the phrase rather than obscuring it.

Can you understand this? The one necessary part of this process is the final translator in the chain, who must be a non-native speaker of English, who therefore would have no inherent drive to make "sense" of what he or she hears. She would only innocently convert what she is given into the English words she knows, which would turn out to be the final message, the Truth.

This is all so far focused in the Middle East, but not all the languages or dialects (so far as I can determine) need to come from that area. I know only that Farsi and Arabic *must* be among them.

Why the movie THE MATRIX is so important is related to all the above: this film takes Reality (ie GCP), which it has sucked out of my head, and converts it to a Concept, a falsification by definition, which is the first insult. But then it proceeds to distort this into fiction, to make it comical and falsely profound. Finally, it garners huge profits and a wide fan base for its makers, which is a triple or quadruple whammy against me, not to mention the sort of sacrilegious mockery no one would dare perpetrate against Catholicism or Islam or Judaism. The movie is indeed amazing, I agree, especially insofar as it gets certain things right, like the character of Morpheus, played, as you may recall, by Lawrence Fishbourne. But the inaccuracies soon multiply and it begins to infuriate me even as it mesmerizes me to see anything like it made public. What amazes me still is that the movie was made at all, and apparently without fear of the disavowal and disrespect I know I’d have been treated to had I propounded the very same Truths.

Thatís all I have to write about these subjects for now. But these are only partial thoughts and not the whole matter by any means.

Wednesday, January 7, 2009

NOTE: This is also post in another blog, Wagblog, but it has an addendum at the end that the other blog does not. I try to keep the two separate and different but cannot always do so, and I found the discussion of sufficient interest as to want to have it in both places. If you happen to have read this in Wagblog, just skip to the end and read the last few paragraphs, which are set apart by a line.

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I am trying to start a new book, another memoir. This is an exciting endeavor but I’ve gotten stuck on the problem, a perennial one I imagine, of how much does one really remember, and how much does the mind “make up," that is, remember improperly? I know that some writers of autobiography -- to my mind a more stringent form, requiring research and some historical context --and memoir make the claim that every word they have written is factually accurate, to the extent that they have checked each one against the memories and records of others. Then there are the infamous ones who have played so fast and loose with the truth as to have lost all semblance of it. These have produced literary scandals (as well as books that probably earned their authors much more income than if they had actually stuck to the facts) and more or less short-lived discourses by the punditry on the nature of truth and memory: what can we really know? Since I am something of a sucker I tend to take both of these at their words, when in fact I daresay that neither of them ought to be. True enough, the one has done more work than the other, and has made an honest effort to search for the "real facts" in his or her history, but my question is this: Can it be done, one, and two, why should the collective memories of say, ten people chosen by the author (biassed) be more "objectively real" than the simple truth of what the author herself remembers? Yes, you might build up a larger group of pieces-of-the-elephant if you have ten blind people who feel only one part. But unless you have someone who knows how the pieces fit together, you still only have elephant pieces...And so ten pieces are no better than the one in the end.

What I am saying is this: the author, the person who lived the life has to be the one to make sense of it. She might have a thousand "elephant pieces" -- memories given her by ten people, yes, or only her own memories but in the end she must construct what the elephant – her life--looked like out of them. In some sense, there are facts and there are facts, but the work, and the life, and the living is all in the interpretation; always was and always will be.

That said, I am having trouble getting started, because I don't know whether I want to use more "objective" sources or evidence this time, or not. I am perfectly comfortable using what is close at hand: my journals, my photos, the people I can easily consult. And I do feel very uncomfortable with mining deeper records: I do not particularly want to see what is written on my hospital charts during months-long stays when I was ranting and screaming for days, or engaging in outrageous behaviors like taking a dump on the floor of the seclusion room, or disrobing and...I can scarcely bear to think I did such things, frankly, and do not want to read what was written about me at the time, knowing nothing can be corrected or updated to show them the "new me". A sad fact about hospital records and workers: they only see you when you are at your worst; they rarely get to know if you get better. Much less get to know you when you are well. And if you ever wanted to sit down and tell them what was actually going through your brain at the time they believed XYZ, but in fact QRS was happening, well, forget it.

So, I am loathe to overturn those stones, growing mossy as they nearly are now, some four years later. It pains me even to bring my mind across the memories of them. I have no wish to flagellate myself. My own journals say little, but it's about all that I want to know. At the same time, my own brow-beating conscience tells me, NO, you must do what you do not want to do. The very fact that you do not want to do it means that you should. No pain, no gain—

Oh, I just go on and on. I would make this next book a torture to me, nothing of pleasure at all, just to serve my scruples. Be gone! If the writing is only to torture me, why do it? I'd be better off with my artwork and sculpture. But writing nurtures me, so long as I do not let my illness turn it into a punishment. Is there any need for me to use the historical records in telling the tale of my life? Did my first book lose anything in my not doing so? I would change a lot in DIVIDED MINDS, if I could go back and do so -- add scenes here, take out one or two, most certainly make better transitions -- but except for appending a much clearer discussion of this very issue, and also a better disclaimer, I wouldn't change the way we wrote it.

So I might have talked myself to a place from which I can start, allowing myself the freedom not to have to delve into the official records or consult professionals involved in my care unless I am currently in treatment with them.

Your past after all resides as much in what you remember as it does in anything documented. You are mostly what you remember, and what you remember is sculpted by time and changes over time. If you think your memories remain the same, read back in a diary you haven’t read before, and recover the accounting of a incident you thought you’d recalled with accuracy...You’ll see how inaccurate your “memory” was and how formative this memory had been nevertheless. Then remember that the accounting is itself a memory, tainted by emotion and interpretation and consider those “ten people with their elephant pieces” who tried to give you objective memories of your history. Were they truly objective? Were their memories, even collectively, any more factual and objective than your memories?

In the end, memory is fiction, as someone once wrote in The New Yorker magazine, memory is, well, made up, not real, imagined. I agree, but it is all we have. Literally. Without memory we would be without anything at all, no culture, no civilization, no nuthin’. So let’s not pretend that the fact that memory is fiction isn’t critical. We need memory, and memory is, well, fundamentally untrustworthy, which is why we need thinking, and thinkers and writers to interpret history and memory... Memory is the most important thing we have, the most important attribute we can impart to anything: in almost every sense of the word, when we remember something we keep it alive. Maybe not literally, but then again, it is memory that keeps a conversation going on longer than five minutes. If you forgot what you were talking about ten minutes ago, or to whom you were speaking, nothing much would get said...

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Here is what someone said to me about the above:

> Memory is a tricky subject, a tricky entity. For you, I guess it all depends> on what incidents you want to concentrate on in your memoir. I don't think> you need to be slavishly dedicated to finding all the facts, just the ones> that relate to your particular tale. I think using your journals and blogs> and listening to those people who are close to you is the right start.>> But what is it you want to emphasize in your memoir? Poking into some of> those unpleasant memories might furnish the right contrast to your ultimate> success in becoming a published writer and artist. But only up to a point,> after all you only need a few examples. The bulk need not be so unpleasant.>> Memory. I've lost a lot of my memories, but I still have the feeling that> some of them are accessible if I could just be patient enough. I, too, have> thought that it is not possible to recreate a life on paper unless you take a> creative license. The main thing is that you are striving to be honest in> your work.

Interesting thoughts. The problems with "finding all the facts" is the question of where and how and who is going to have them? I mean, I could go, for example, to the records of the psychiatric institute where I was once hospitalized after a catatonic episode triggered by an adverse reaction to risperidone. In the ED they dismissed it as "playing possum" once they determined it was catatonia and not a "pontine stroke" and sent me to the psych hospital. There they took me off all meds, and watched me go into a kind of withdrawal, since I'd been abruptly hauled off of two anticonvulsants and a beta blocker as well as 2 antipsychotics and an antidepressant. Within 3 days I was ready to go into seizures and could have had a cardiac arrhythmia or worse, and was literally trembling and sweating with fear and panic, all because they refused to give me my usual medications. On top of this, they claimed my bloodwork said I was positive for "cannabis and benzodiazapines." Now obviously they had mixed me up with someone else and I tried to tell them this, but they didn't believe me and told me there was no way I could have the "mistake" expunged from my record.

The next day, the doctor told me I had assaulted him, to my face accused me, or rather bald-faced lied by saying so, since it simply never happened. I had been there and was conscious. He said that at lunch I had assaulted him with my lunch tray...which was complete and utter hooey...I had not done any such thing, had not even threatened him, not even verbally, not even spoken a threat...He was simply planting seeds to keep me there...

Now then, if I went back to this unit to find "facts" in the record, what would I find there? Facts? Truth? Hardly...I would find, what? An account of some sort, yes, and maybe some of it might be what one nurse or some other believed was going on. It turned out some believed that I had come in high on grass and benzos. But was it true, was it a fact? No. I would not discover anything in the chart, then, that would teach me something I should know about me I didn't know, that is, no facts, only misstatements and even lies...Which might in fact be interesting but NOT factual. And I might learn some opinions about my behavior, some opinions, which is what nursing notes are, about how it appeared I was feeling or what I said. But not much more besides my BP and temps and maybe a few other "objective" stats, though those were few and far between. Some of those were mistaken as well, since one male nurse decided to lie about my weight and what I ate ("for my sake") so I wouldn't be made to gain any weight. He liked me thin, he said...CRAZY, right? But this was all true, and factual though not what was written down in the chart.

Too bad I didn't take more careful notes during this one hospitalization (I usually am never without a pen and notebook) or if I did, I have not found them. But I do recall this clearly, because it so incensed me it was "flashbulbed" into my memory...Because I was so incredibly upset and distressed by everything that happened during my relatively brief stay and so distraught half the time, I think most of it was simply etched into my brain, unlike many bad times, which have been erased like blood washed off painted walls.

Anyhow, I didn’t mean to go on and on about this. Fact is, I have plenty of unpleasant memories to offset the good ones, believe me. And I am honest enough and a good enough writer to want to write about them! (Also, I know how to maintain tension and you don't do it by writing only about positive or happy events, as my first book ably demonstrated...)

As for creative license, I dunno...I only wrote what I remembered, as I remembered it, in my first book. In other words, I did not invent anything, except inso far as I was forced by the publisher to amalgamate elements of one doctor into another. But the incidents were as I recalled them, even if the physical attributes of the doctors might have changed. But frankly the resident doctors were a dime a dozen, there were so many. And the faces were interchangeable anyway. I just remember that the doctor stood there, and that he did such and such. Only a few docs that I worked with for a longer span of time really became individual. But the residents that I only saw for a month or two inside the hospital, those I do not recall. Nevertheless, I do not use “creative license” in the sense of inventing memories or fictionalizing. Memory may be fiction, but that doesn't mean that writing your memories, writing memoir, means that you simply make them up! Perhaps you misunderstood that discussion -- memory is fiction merely implies that one's memories are malleable, fluid, and that they do not correspond to anyone else's. That the truth is determined by one's memories of the so-called facts, which themselves are nowhere to be found, not even in the equally nowhere to be found "historical record" (which is about as reliable as my hospital chart!)

Dialogue is by necessity imprecise. I don't believe anyone reconstructs conversations accurately. But I know what I think people said or what I remember they said. If I also know how faulty that recall is, I also don’t consciously invent memories of it or even parts of memories. I am simply aware how differently others might recall the very same situation. In short, truth, that is, the facts are not absolute: no matter how certain you are that something happened as you saw it, you can be sure that there is someone who saw it happen precisely the opposite way and holds that view with equal certainty.

Enough...I am certain you did not expect or need this much of a disquisition on the subject. I thank you, however, for triggering some additional thinking on the matter.

Tuesday, January 6, 2009

This is actually double cheating as it was first written as a blog entry in 7/2004.

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I realize this is "cheating" but a friend found this 1998 article I wrote for the Hartford Courant (which published it under another title) when he was cleaning up his apartment, and he brought it up for me to reread. I thought that even though the specific circumstances have changed, and the article in that sense is dated, there was enough that remains relevant even today to show it to interested readers. In fact, given recent developments, I was amazed that I was the author, since it seems hard to believe I could write something as cogent today. Whatever is the case, I hope reading it here will prove helpful and/or useful.

TWICE-TOLD TALES: NO HAPPY ENDINGS

We may never know, or at least never fully comprehend, what short-circuited synapse, what blip of corrupted information or neurochemical glitch inside the brain drove Russell Weston to gun down two Capitol police officers this July, or Michael Laudor to murder his fiancee only weeks earlier, and with her his unborn child.

Laudor was a Yale Law School graduate and activist on behalf of the mentally ill, and seems to be a man for whom adjectives like brilliant and charismatic crop up as reliably as Homeric epithets. Weston, in contrast, seems to have been largely unemployed and undistinguished, except as a loner with certain bizarre beliefs. Both men, long diagnosed with schizophrenia, had stopped taking medication. It also seems likely, at least in Michael Laudor's case, that if he had had adequate medication levels in his blood, Caroline Costello would be alive today, and Laudor a free man.

But why would someone so prodigiously intelligent, with such a promising future, stop taking the pills that were so essential to his well-being and sanity? Why would anyone? For Laudor, it wasn't from lack of insight, as the shrinks like to say; by 1995, he was speaking openly about having schizophrenia, even in an interview with the New York Times. He knew he was ill and must have known, intellectually at least, the risks he was taking.

The information about Weston is sketchy at best, but it is clear that he had little effective follow-up after his discharge from a Montana state hospital.

I cannot speak for Laudor, much less for Weston, but after more than 20 years of struggling with schizophrenia, I have learned that the waxing or waning of symptoms is often as unpredictable to patients as to physicians. Relapses are usually caused by many factors but my guess is that Laudor's relapse was induced by his success. Easily overwhelmed by stimulation or ordinary stress, as are many people with schizophrenia, and not recognizing his limits, or not accepting them, he may have over-extended himself, with tragic consequences.

Hold it! I can hear the objection: Most people occasionally over-extend themselves, yet they don't commit murder.

But by at least one criterion, Michael Laudor and Russell Weston are not most people: most people don't suffer from schizophrenia.

Although it doesn't seem that Weston had any opportunity to try the newest medications, Laudor was taking risperidone, one of the new antipsychotic wonder drugs. He appeared normal, more or less unimpaired. But because he was so competent, people may have forgotten the shadow cast over his life by an incurable mental illness that even the best drugs treat imperfectly.

Schizophrenia is a brain disease, as anyone who is up to date will tell you. But the brain is the seat of the mind and the mind the source of one's self and of all that makes us human. To suggest that such an illness, with its profound impact on a person' s mind and sense of self, is a biochemical imbalance no more troublesome than diabetes, is to invite cruel, though unintended and unforeseen, consequences. Russell Weston Jr. coped largely by keeping to himself. But the same was not true for Michael Laudor, who seemed to be outgoing by nature and to enjoy the spotlight. But because effectively treated schizophrenia can be controlled, and therefore concealed, the impact of the disability it inflicts is frequently discounted.

Imagine, if you can, that you have schizophrenia, as more than 2.5 million Americans do. The older typical medications, most of them similar to Thorazine, are not only less effective, but often produce side effects like the infamous Thorazine shuffle, as well as tremor, dry mouth, weight gain, an excruciating physical restlessness, and for some, the disfiguring disorder known as tardive dyskinesia. I suspect that Weston, like many, found this cure worse than the disease, if he believed he was ill at all.

But imagine that after years of illness, a new medication alleviates the worst of your symptoms, as it seems to have for Laudor. If you've always been a high achiever, you push ahead. Soon there's a lucrative book proposal, a million-dollar-plus movie deal. You've gotten engaged, your fiancee is pregnant and you're being hailed as a role model for all mentally ill people, a source of inspiration and hope. And yes, it is a thrill, it's huge, it's exciting and you would do it all, if only you could...

But the same miracle drug that helps you function makes you tire easily, gain weight and sleep more than you'd like. Maybe you feel you can't ask for a breather because if others cope with the pressure, you should be able to as well and if you admit to being less than capable, you'll disappoint people who are counting on you.

Wondering how you could better manage to live up to the demands success has imposed, it occurs to you -- as it will at some point to most people with schizophrenia -- that if you temporarily stop taking your medication, maybe you could catch up, get some work done. At first, you cut back on your pills just a little, but it snowballs until you're no longer taking any. Whether you're Michael Laudor or Russell Weston Jr. the stage at this point is set for disaster.

If something can be learned from these tragedies to help avert a next time, it may lie, first, in acknowledging the often agonizing side effects of standard medications, which are inexpensive and therefore the only option for most cash-strapped state hospitals. Then society needs to acknowledge that if the side effects of medication *feel* intolerable, the likelihood is enormous that patients -- with or without insight -- will stop taking them, and be reluctant to return to treating physicians for fear of being forced to do so.

And finally to recognize the terrible irony of Laudor's situation. While the public celebrated him as a shining exemplar of what a person with schizophrenia can achieve, it seems simultaneously to have treated him as if he no longer suffered from mental illness at all, and certainly not from the serious but less visible vulnerabilities that come with the package. In short, he was acceptable as a ìschizophrenia poster boy, but only so long as he wasn't noticeably schizophrenic!

Russell Weston Jr. and Michael Laudor have a chronic illness that by its nature can obscure one's judgment, including the ability to evaluate one's own mental health. Sane as he apparently seemed until a few weeks ago, Laudor was not in recovery, he was in treatment. Weston was as isolated by his illness as by Montana's wilderness.

My sense, and my sorrow, is that both might have been better served by someone who more vigilantly monitored the build-up of stresses, both external and internal, knowing how schizophrenia works, how the sufferer is often the last to recognize when enough is enough.

(I welcome any public comments on this piece, but readers who prefer to communicate privately may contact me at pamwagg@cox.net)

COMMENT:AUTHOR: Paul WinklerEMAIL: paul.winkler@cogeco.caMs Wagner, the message in this 1998 article can NEVER be retold too often. Far from being the product of "cheating", on the contrary I wish it were possible to legislate every publication in the land to reprint it quarterly on the front page.

Coming more from the bipolar side of the brain, I feel that the case histories of Russell Weston and Michael Laudor are very probably reflections of other people's cases whose mental illnesses are different, but similarly devastating. However, having read of unarmed schizophrenics being shot dead by Kingston, Ontario and Toronto police in recent years, I am of the opinion that public education is urgently required, as of last week.

Unless something improves, I can't help but feel it may be you or I who next heads down on the roller coaster to Hell, helpfully propelled by our angry, ignorant neighbours.

Thank you for making your valuable contribution. It's information like this which may yet save us.-----COMMENT:AUTHOR: barbDATE: 07/09/2004 11:12:25 PMWhat a brillant and sad piece....I am amazed at this gift that you have to let us into the enormous struggle with this disease...Thanks for sharing and educating us, so that we in turn may be better people in the relationships with our schizophrenic loved ones.-----COMMENT:AUTHOR: Paula KirkpatrickDATE: 07/08/2004 05:24:31 PM No one knows better than you, Pam, of the many times horrific effects of "managing" your medication yourself, even though you feel fully capable of doing so.

I think this blog serves as a very important and informative vehicle that will hopefully prevent any of your readers with schizophrenia from experimenting with discarding their medication, even temporarily. The consequences could be far worse than the admittedly unpleasant side effects that inevitably accompany anti-psychotic meds. I feel you may have helped more people than you could possibly imagine with your bit of "cheating". I applaud your courage and your empathy.

This is the delusional thinking that plagued me at the time, and it is a problem that has continued up to this day, though clearly I now recognize that I should label it as a delusion, at least for you, the public...

DATE: 06/20/2004 03:56:49 AM-----

This is what I have been thinking about, partly copied and pasted from a letter I recently wrote. I hope you won't mind my sharing it in this fashion.

What I want you to know is something that is TRUE in the most fundamental sense, though I know you will have trouble with it, trouble accepting it, largely because you are all so much the opposite. But the Truth, capital T, whether you believe it or not, is that I am evil and as a consequence, if I were to do the Right thing I would not write here or talk to friends, or allow myself even to be on this earth any longer. (I assure you that though the reasons are selfishness, cowardice and plain old fear, I refuse to do what I should do, and I promise I won't.)

More than that, the worst thing about this is the understanding that nothing matters, nothing alters this fundamental truth, not even whatever little I have ever done that might be considered kind, generous, caring and so forth, not even trying to be the saint I once wanted to be, the child who did things without wanting credit for them, acts of charity (as in the Latin, caritas) and other stuff, things that, by the way, adults inevitably spoiled the purity of by noticing and admiring. Oh never mind, it doesn't matter, and even if it did, the whole point is that I shouldn't tell you what I did or even what I do now. Just trust that I once did my best to be as Good as possible, to help people and be as unselfish as I could (though this may seem utterly unbelievable now, I suppose). This has always been very important to me, as it continues to be...

But to finish the thought, what I understand is this: no matter what I have done, no matter what I do, no matter how charitable, kind or unselfish the act, NOTHING can ever compensate for the evil that comprises my essence, my most fundamental self and being, NOTHING. That's what makes me feel so sad and hopeless: the uselessness of it all in terms of changing what cannot be changed. I never wanted to be evil, I still don't, and I still try to make up for it. But nothing can change who and what I really am, nothing I do can atone or compensate for my evil in any way. And that fills me with despair, the utter futility of trying to be forgiveable.

I know that, at least in Christianity, forgiveness CAN'T be earned, that no one actually deserves it; one simply gets it for free, literally by the grace of God. But even such a gift as this is forbidden me, completely beyond reach; I can't be forgiven because I am too conscious, I know too much, I understand my essential self, and therefore have no excuses. I'm not able to say: I didn't know, I didn't understand...Because in fact I do understand and am conscious of everything. Therefore I must be Satan, the one and only completely unforgiveable soul on this planet.

You should understand by the way that being Satan is something you're born to, not something you will, not something you choose. But you cannot do anything to change it. You are evil, and all the good things you try to do will never make up for that, no matter how secret, how selfless, how kind or loving or charitable. All I know is that if I were as good as I profess I want to be (and should be), I would withdraw myself from everyone's presence forever, not write here again, so as not to infect anyone any longer. No one is safe; all are vulnerable, most of all those who claim not to need to worry about it.

NB: even though Satan, I am also human and like anyone else I want the usual comforts, the relief, if nothing else, of human company. So I continue on, selfish and evil, knowing nonetheless that the world could be purified and at peace, but only were I gone.

In April 2004 I came home after a three month stay and ECT in a Connecticut hospital. This is my account of it in two relatively brief blog entries plus the comments that accompanied it. I did not enter the comments that preceded it, which came in the wake of my long absence, but they were many.
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After three months of an in-patient stay, I am thoroughly sick of hospitals. In an out of restraints and room seclusion innumerable times, on one-to-one with a sitter for weeks, having more than 13 ECT treatments, half by court order and deemed necessary by my sister and conservator, it was a miserable time all around right up to the last day there. I emphatically do not recommend it! I would like to get back to regularly blogging, but for now simply want to announce that I am home and ready to resume where I left off. I did do a radio interview by phone while at St Raphaelís, with Bill Lichtenstein's INFINITE MIND series (*in 2008 BL's series was removed from NPR after discovery of a hidden conflict of interest between the main psychiatrist in it being paid by drug companies and the promotion of certain drug-related psychiatric prescriptives, which could no longer be seen as unbiassed or objective). You can find it by doing a google search for Infinite Mind, then once at the Welcome screen, doing a search for FOUR LIVES and clicking on the link that allows you to listen on-line. Any feedback from listeners will be greatly appreciated. My twin sister and I are featured in the second half of the hour-long show. But for now, here endeth my 14th blog entry, short as it is, with promises to resume at greater length ASAP. Glad to be home and back on-line!
____________________________

I had a chaplain friend in the hospital who said that saying Fuck God was at least a relationship, and a meaningful one. Hope this doesn't overly offend anyone. But read the poem and you'll see how I mean it.

BURNING BRIDGES
By Pamela Spiro Wagner

"Fuck God," you say, the worst thing
you can think of, and "Jesus F. Christ!"
when everyone knows what blasphemy
the F stands for. And because the lightning bolt
doesn’t strike you down as you’ve been
promised, you decide he, or she, if God,
doesn’t much cut it in the omnipotence
department. You would smack anyone else
who said such a thing, meaning
you, yet God doesn’t even send a thunderclap
or an ominous massing of clouds
off to the northeast just to remind you
Who’s Who.
So now you stand sheepishly
in church between the pews while others do
things you’ve completely forgotten, mumbling
the Lord’s Prayer which is all you have not,
and pray no one you knew as an atheist
sees you with your head in a hymnal.
God you swore off as a militant teen and are ashamed
to be seen going back to just for succor
in a time when all your friends
nod at you in the street but won’t stop
to speak except to explain prior engagements
like the house fire they’re running
towards or from, or the big C
they had an MRI for with ambiguous results.
Even death won’t shake them
from the strenuousness of their disbelief.
They’re convinced God is for children and idiots
with substandard IQ’s or people who need
their heads examined. So in church, kneeling
because others are kneeling, you examine
your head for shit-for-brains
when through the open door tumbles
a small bird, landing on your shoulder,
in its beak it bears a twig,
and in its eyes a look you almost recognize.

ANOTHER ADDITION to Blog Entry:

My chaplain friend says I am courageous to dread ECT as much as I do and yet submit to it, but I’m going to disappoint her in that, because despite being court-ordered to treatment sessions, I’m quitting any but the most forced participation and even that I shall do my best to sabotage. I can’t tolerate it any longer; it is a torment going to sleep and an even greater one waking up in enormous if amorphous distress and confusion, and it later fills my days with nausea, headache and olfactory hallucinations. I simply cannot see how unlimited once-monthly sessions can benefit me, at least not any more than they supposedly already have. And the dread discolors my days for weeks in advance. I don’t care that it’s the best they can offer me right now: I don’t want it and don’t feel I need it or that the benefits outweigh the costs and/or uncertainties. And if they try to send the police after me (since I shall neither arrange a ride nor the required daily companion) I shall simply eat a large breakfast, effectively sabotaging any efforts on their part since I know they cannot give me anesthesia on a full stomach. That is how I thwarted them in the hospital when I wanted to refuse: I’d simply grab some food from the kitchen and quickly down it before they could stop me, and that short-circuited the day’s treatment session.

If I have to, if things start breaking down seriously, I can take a low dose of Zyprexa, which though it induces weight gain, is preferable to ECT’s horrors. And there’s no proof that I shall need that at all, since I am quite compliant on my Geodon and several mood stabilizers. I just can no longer live in this constant state of dread and fear, not when I know how to alleviate them and when I see little use in allowing such a state to continue.

Let me describe a session for you, just in case there are those of you who have never experienced it before.

First all of all, no food or drink after midnight (effectively after dinner) and no anti-convulsants the night before, no medications on the morning the treatment is scheduled. Nothing by mouth at all. Then you arrive at the clinic and the first thing they do is give you a shot of Robinal to dry up any oral or bodily secretions that might interfere with the ECT session in some way. If you’re lucky, they can take you in a half hour later. Then you get up on the stretcher and lie down with your head on this little pillow and they start searching for an appropriate vein into which they will direct the anesthesia. Meanwhile, they squeeze some electrical jelly onto a headstrap and tighten that around your forehead. They place some electrical detection pads and leads on your chest as well and once the IV is inserted tell you you’ll be going off to sleep soon. Then you smell/taste something awful as the anesthesia briefly registers before you lose consciousness. Nothingness follows, until the nurse shakes you awake telling you it’s all over, the treatment has been done and you’re almost ready to go home. You’re moaning, half asleep still, and uncertain the worst is past, and it takes you some time before you’re conscious enough and steady enough on your feet to get down off the treatment table and toddle on through to where your companion is waiting for you. Several times I’ve retched immediately, though not every time. I know I’m never quite sure I’ve actually had the treatment or if they are still making me wait for it, interminably and cruelly. The anesthesia smell follows you for quite a while, and though they counsel one to eat a light breakfast, eating is the last thing on my mind. All I want to do is lie down and sleep off my headache and queasy stomach. I don’t feel immediately better as they claim I look (I think that is wishful thinking on their parts) and in fact I’m not sure I’ve felt better at all after session #13 or so. I’m not convinced I wouldn’t have gotten just as much better with some closer nursing contacts and some kinder people to talk to during the last 3 months.

Anyhow, that's my brief synopsis of an ECT treatment session. I know it doesn’t sound so terrible, but to me it is frightening in the extreme and I want no more part of it. If EP-MRI’s were available I’d jump to use them as they’ve been shown to be far less invasive and just as effective (at least according to a Scientific American article last month.) But so far no one’s offering them. So I’m stuck with either accepting or rejecting ECT and my choice is now to reject the treatment as not worth the cost/benefit ratio. I know some people will disagree strenuously, but they are they and can tolerate what has become intolerable to me, and of little obvious benefit. God bless them. They are perhaps better people than I am, but I’ve reached the end of my rope and the end of believing that this is something worthwhile doing.

About Me

I have both schizophrenia and Lyme disease. Now the author of WE MAD CLIMB SHAKY LADDERS: Poetry, (CavanKerry Press, 2009), (my third book is LEARNING TO SEE IN THREE DIMENSIONS, not yet published) I won First Place in the 2001/2 international BBC World Service Radio Poetry Competition. In 2005, I co-authored, with my twin sister, a psychiatrist, DIVIDED MINDS: Twin Sisters and their Journey through Schizophrenia (St Martin’s Press), which in 2006 won the national NAMI Outstanding Literature Award and was a finalist for the Connecticut Book Award. I am also an artist, whose work is displayed here and elsewhere, right now, best viewed at my Flickr site or at my wordpress blog, pamelaspirowagner.com.
In this blog I hope to recreate my old schizophrenia.com "wagblog," which was lost when that website temporarily deconstructed. It can't be done perfectly but we'll see what is possible.
Schizophrenia for me has been a journey that was not expected to end well but my continuing life has validated all the shreds of hope anyone ever held out for a drowning swimmer. It has especially validated my hanging on when it felt like there was nothing left to hang on for.